About the Registry

What is a clinical registry?

A clinical registry brings together health information from a group of people living with the
same condition. By collecting information in a consistent and standardised manner, we can
follow how a condition evolves over time and study disease patterns and outcomes in this
given condition. This type of information is called real-world data (RWD) and allows
researchers to build a broader picture of how a condition is managed and how people respond
to treatment. 

Why a registry for Multiple Myeloma (MM)

Multiple Myeloma is a complex disease that can behave differently from one person to another,
meaning that each person can experience a different disease journey. People may receive
different treatments and experience different responses to treatments, as well as periods of
remission, progression or relapse. 

The Multiple Myeloma Registry

This Registry aims to establish a national, long-term platform to collect and bring together
valuable clinical information on diagnosis, disease characteristics, treatments, treatments
response and outcomes from participants across the Republic of Ireland. By building this
resource, it can overtime support clinical and translational research for a better understanding
of MM and ultimately support care.